I heard one of my favorite songs when I was grocery shopping on Thursday morning. Its lyrics ran through my head later that evening…
My youngest called out for me after she’d gotten herself in bed on Thursday night, “Mommy, aren’t you going to come tuck us in?”
Hesitating, I replied, “I’m sorry, honey. I can’t right now,”
“Why?” she asked.
“Ronan’s had some seizures. I can’t leave him yet,” I answered.
I could tell that she was crushed. For a little kid, going to bed without a hug and a kiss can be devastating. I promised my daughter that I’d try to be there soon and added that if I wasn’t, she should go to sleep. I’d check on her later.
That didn’t go over well.
I turned my attention back to Ronan, but I heard a small voice at the doorway. “Mommy? Can you tuck us in here, in Ronan’s room?”
Offering a smile, I said, “Of course. Come here so I can give you a hug.”
She fell into my lap for a hug and kiss. Ronan’s other sister and his little brother weren’t too far behind. Eventually, Fiona, Ronan’s oldest sister also joined us. Taking turns to get a hug from me and to give Ronan a kiss goodnight, the siblings sat down on the floor next to Ronan’s bed.
“Mommy?” Izzy asked, “Is Ronan going to be okay?”
Trying to be positive, I answered, “I hope so, sweetie. He had a few small seizures before we said prayers, and he’s had some more since. I’m going to stay with him in case he needs me, or in case…things…get... In case things don’t go well. But don’t you worry…”
Interrupting me, Izzy said matter-of-factly, “Mom. I have to worry. He’s my brother,”
I turned away. I didn’t want her to see me cry.
“You’re an amazing kid, you know that, Izzy? All of you are,” I let them know. Scooting closer toward Ronan, Ronan’s siblings gathered around. I knew that trying to send the kids back to their rooms was not an option. They were not going to leave their brother’s side.
After assuring Ronan’s younger brother that we did not need to go to the emergency room, he took the first shift to keep Ronan happy. Willem read some of Ronan’s favorite pages from our stash of Dr. Seuss books as well as from Ronan’s new favorite story, The Very Hungry Caterpillar.
“Mom, if you have to take him to the hospital, I’m going with you.”
I decided not to answer her. The siblings were not ready to hear no for an answer.
The kids took turns quietly reading or repeating Ronan’s favorite movie scenes to him and only took a break when we thought that Ronan was about to have another seizure. When those happened, they’d sit quietly, bow their head and say a quick prayer, and offer that they were more than ready to assist should I need any help. After those moments passed, and while waiting for things to get better, the kids and I quietly talked. We talked about seizures, autism, the emergency room and how hard this must be for Ronan. For being so young, they asked some really great questions.
Why isn’t Ronan getting better?
Mommy, why isn’t the medicine working?
Since it’s not working, why can’t we try something else? There’s got to be something else.
What happens if the seizures come back in the middle of the night?
Who are you bringing to the E.R. if you or Daddy have to bring Ronan there? (Each of them wanted me to promise that I’d pick them. They were adamant that he not go alone.)
Answering each question as honestly as I could, the kids continued to quietly talk and to hold Ronan’s hand and to reassure each other that things were going to be okay. Then, as quickly as they’d come on, there was a calm. The seizures had subsided. We could breathe easy. For now. For now, the siblings’ fear of uncontrollable seizures, of having to use emergency meds, of emergency rooms, and worse, of their brother dying, was over. I thanked the kids for their help and said it was time for bed.
This time, they did not protest.
One by one, the siblings departed. First my youngest. Then, Ronan’s little brother. Then, Izzy. And finally, Fiona. Grateful that Mommy did not have to use the emergency meds or need to take their brother to the E.R., the kids went back to their rooms and got into their beds. Ronan, already under his covers, was quieting down and getting ready to fall asleep. Before he did, though, one of the siblings came back. Izzy needed to see Ronan one more time.
Without saying a word, Izzy looked at me and then walked toward her brother. Giving Ronan one more kiss, she said, “I hope you feel better. Good night, Ronan. I love you.” With that, it was time for lights out.
That night, Ronan got almost a full night of sleep. With only one wake up in the middle of the night, he got up for the day around 8:30 am. Ronan was a bit slower than usual, but he woke up happy. The kids were happy, too. They greeted their brother as he walked into the kitchen on Friday morning.
Good morning, Ronan.
Are you feeling better?
Once they’d said hello to Ronan, they turned to me. Speaking quietly so that Ronan could not hear their questions, they asked:
Mom, are you sure he’s okay?
No emergency meds, right?
No trip to the E.R. last night, right?
Will he have any seizures today?
I hugged the kids and answered their questions:
No emergency meds.
No trip to the E.R. last night.
I really, really hope not.
Ronan was seizure free on Friday. The kids were excited and made sure to say thankful prayers for that when we gathered for bedtime prayers later that evening. As each one of Ronan’s siblings said their intentions, Ronan was at the top of the list…so that Ronan can communicate and talk with us…so that whatever needs to be healed in Ronan’s body is healed…so that he doesn’t hafta have seizures anymore…for Ronan to be able to talk and play with us.
The siblings pray daily for their brother. They pray unceasingly for his well-being. They pray for hope, for healing, and so that Ronan can experience everything they get to. They pray without fail and even when it’s been a tough day. They pray knowing that tomorrow could be an even tougher day, too. Somehow, they believe that things can get better and will only get better. I’m holding onto that because some days, like on Thursday when seizures plauged my little boy, it was anything but.
Cathy Jameson is a Contributing Editor for Age of Autism.
I don’t usually share specific treatments that we are using, but I will share that Ronan has used Hemp oil, is doing a sensory-based therapy program, and that he is on an anti-epileptic medication. If you have a link, a journal article, or an idea to suggest, or if you want to share a protocol that worked for you to reduce and/or eliminate seizures, please leave that information in a comment below. I promise to read every single one of them. xo, Cat